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Thursday, November 17, 2016
National Living Donor Assistance Center (NLDAC) Links
Saturday, September 17, 2022
Non-directed organ donors and NLDAC financial support
For some years I've been a member of the advisory group of the National Living Donor Assistance Center (NLDAC) which is authorized to offer federally funded financial support (for travel, and now also for lost wages and childcare expenses) to needy donors whose recipients also cannot afford to offer such support. As kidney exchange has grown, so have the number of non-directed donors, who don't have a particular recipient in mind. In a recent email, NLDAC has defined how these donors can qualify for financial assistance.
"Defining Non-Directed Donors
"Eligibility for NLDAC depends primarily on the recipient's household income. This is because the Organ Donation and Recovery Improvement Act requires NLDAC to assess the recipient's ability to reimburse their donor before providing reimbursement with federal funding. Most donors have a particular recipient in mind, and that person is allowed to reimburse their expenses, if they are willing and able to do so. NLDAC provides reimbursement when the recipient cannot afford to provide it. Some donors do not have a recipient to ask for help, though. A non-directed donor is a living donor with no intended recipient. These donors can apply to NLDAC without recipient information because there is no identified recipient. Non-directed donors are eligible for NLDAC regardless of their eventual recipient's information, as long as the donor meets the residency requirements and applies on time.
"Let's consider some examples:
"Tina heard on the news that there are 5,000 people waiting for a kidney transplant in her state. She called a transplant center and asked that they give her kidney to anyone who needs it, if she is approved to donate. Tina is a non-directed donor because she has no intended recipient.
"Anthony read about a stranger's search for a living kidney donor on Facebook. Though he doesn't know the person, he would like to be evaluated as a potential donor for them. He is a directed donor because he has an intended recipient, even though he doesn't know them personally.
"Jacqueline wants to donate to a member of her church without revealing her identity to the recipient. She is a directed donor because she has an intended recipient, though she wants to remain anonymous.
"Esther wanted to donate to her husband, but they are not a good match. Through kidney paired donation, she donates to a stranger, and the stranger's loved one donates to her husband. Because Esther has an intended recipient who received a transplant through her donation, she is a directed donor.
"Devin was being evaluated as a potential living donor to his uncle when his uncle received a deceased donor transplant. Devin decided he was still willing to donate even though his uncle no longer needed his organ, and asked the transplant center to give his kidney to anyone on the waitlist. Devin is now a non-directed donor because he does not have an intended recipient anymore.
"Which of these donors can apply to NLDAC without their recipient's information? Tina and Devin, because they are donating without an intended recipient. Anthony, Jacqueline, and Esther can apply with their intended recipient, and NLDAC will keep the donor and recipient's information private. Esther would apply with her originally intended but incompatible recipient, her husband."
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All my posts on NLDAC: https://marketdesigner.blogspot.com/search?q=nldac&max-results=20&by-date=true
Thursday, December 27, 2018
Compensate living donors for lost wages and other expenses?
One simple change the government could make to encourage kidney donation
Donors often forgo wages for a couple weeks to save a life. That can be fixed.
By Dylan Matthews
"there’s a group that helps people with the travel costs associated with donating. It’s called the National Living Donor Assistance Center (NLDAC), and it’s funded by the federal Department of Health and Human Services (HHS), which administers Medicare. But the group helps a relatively small number of donors.
...
"NLDAC can pay for “travel, lodging, meals, and incidental expenses,” but barring regulation from the HHS, it can’t reimburse lost wages or pay for child care for donors. The group is currently running a randomized controlled trial, funded by the Laura and John Arnold Foundation, in a handful of transplant centers where it does reimburse for lost wages to see if offering that increases living donations.
"But NLDAC could adopt that policy nationally, right now, with a simple regulatory change. No action from Congress would be required, according to NLDAC’s own analysis. The HHS can, on its own, issue a rule permitting NLDAC to reimburse lost wages and child care expenses. And randomized trial aside, we already have strong reason to think that reimbursing lost wages would significantly increase donations.
...
Saturday, July 21, 2018 Effects of removing some financial dis-incentives to kidney donation through the National Living Donor Assistance Center (NLDAC)
Tuesday, October 3, 2017 The effect of paying the travel expenses of living kidney donors: Schnier et al. on NLDAC
Thursday, December 22, 2016 NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)
Tuesday, September 27, 2016 National Living Organ Donor Assistance Center (NLDAC)
Tuesday, August 27, 2013
Why it's hard to reimburse non-directed kidney donors for their travel costs
To the Editor:
We are responding to the Melcher et al. [1] article, which recommends that the National Living Donor Assistance Center (NLDAC) pay for travel and lodging for nondirected donors (NDDs). We commend the work done by this group of stakeholders and believe the publishing of their findings is vital to improving the process of kidney paired donation. We do, however, need to clarify one point in their many important recommendations.
The article recommends “The National Living Donor Assistance Center should provide travel and lodging expenses to the NDD.” It is important to note that there are limits to the NLDAC program that were put in place by the U.S. Congress. NLDAC cannot pay for the travel and lodging expenses for all NDDs. The Organ Donation Recovery and Improvement Act (ODRIA) [2] established the legislative parameters for NLDAC. ODRIA states that individuals may not receive compensation from the grant if these expenses can reasonably be paid by a State or Federal program, an insurance company or the recipient of the organ. ODRIA requires means testing of the recipient's household income.
In practice, this means a recipient must be identified before an application can be filed with NLDAC. Because NDDs do not have a recipient identified before their evaluation trip to transplant center, NLDAC cannot reimburse those expenses. However, after a recipient is identified, a NLDAC application may then be filed. It should be noted that NLDAC received 42 applications between 2008 and 2012 for NDD, of which 32 were approved, providing NDDs with reimbursement of travel expenses through NLDAC.
If the recipient's household income is below the income threshold of 300% of the HHS Poverty Guidelines, NLDAC is allowed to reimburse those donor's expenses for the surgery and medical follow-up trips. If the recipient's income is above the income threshold, NLDAC may reimburse the donor's expenses if financial hardship is proven by the recipient. If the application is not approved, the National Organ Transplant Act (NOTA) [3] allows the recipient to reimburse the donor's expenses.
Lastly, we agree with the article's recommendation that payers should cover donor travel and lodging costs given that, by donating and traveling, the donor is enabling not only the recipient's transplant, but also those of other recipients.
This letter represents the views of the authors and does not necessarily represent the views of the grant funder.
A. O. Ojo1*, R. M. Merion2, D. H. Howard3 and P. H. Warren4
1Division of Nephrology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan
2Division of Transplantation, Department of Surgery, University of Michigan, Ann Arbor, Michigan
3Department of Health Policy and Management, Emory University, Atlanta, Georgia
4National Living Donor Assistance Center, American Society of Transplant Surgeons, Arlington, Virginia
*Corresponding author: Akinlolu Ojo, aojo@med.umich.edu
The letter is found under the heading
Response to “Dynamic Challenges Inhibiting Optimal Adoption of Kidney Paired Donation: Findings of a Consensus Conference” by Melcher et al.
American Journal of Transplantation, Volume 13, Issue 8, page 2228, August 2013
Saturday, July 21, 2018
Effects of removing some financial dis-incentives to kidney donation through the National Living Donor Assistance Center (NLDAC)
It might help make the case for yesterday's proposed legislation...
Return on investment for financial assistance for living kidney donors in the United States
Abstract
Background
Methods
Results
Conclusions
Thursday, December 22, 2016
NLDAC announces a trial of Lost Wages Reimbursement for Living Organ Donors (funded by the Arnold Foundation)
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Monday, June 3, 2019
Steps towards reimbursing kidney donors--update from Frank McCormick
Frank McCormick brings us up to date on recent steps to relax some of those constraints. Below I quote from his recent email:
"Since 2007, the federal government has had a program to reimburse low income organ donors for their travel and lodging expenses. This program is currently administered by National Living Donor Assistance Center (NLDAC) at the University of Arizona. The Secretary of Health and Human services (HHS) has the legal authority to administratively expand the mandate of this program. Toward that end, the Office of Information and Regulatory Affairs (OIRA) in the Office of Management and Budget (OMB) has just scheduled a new rule change:
Title: Removing Financial Disincentives to Living Organ Donation
Abstract: This proposed rule would amend the Organ Procurement and Transplantation Network (OPTN) final rule to further remove financial barriers to living organ donation by expanding allowable costs that can be reimbursed. The changes would apply to specified incidental nonmedical expenses incurred toward living organ donation.
2. The second front is centered on the Advisory Committee on Organ Transplant (ACOT), a non-government committee that advises the Secretary of HHS on organ transplant matters. At its meeting on May 20, the committee heard a very informative presentation by Robert Merion of NLDAC:
A key part of the presentation was NLDAC’s Vision for Expansion:
1. Expand eligibility for reimbursement to donors with incomes up to 500% of the federal poverty guidelines (it is currently 300%)
2. Waive income verification for donors needing less than $500
3. Approve applications from non-directed donors (i.e., living donors who do not have a specific intended recipient)
4. Reimburse wages lost due to organ donation
5. Reimburse child care/elder care expenses due to organ donation
6. Require NLDAC information to be given to all recipients and donors
ACOT endorsed the first five recommendations and forwarded them to the Secretary of HHS. "
Sunday, January 1, 2023
New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul on Dec. 29
Frank McCormick forwards this email:
From: Elaine Perlman
Sent: Thursday, December 29,
2022 5:44 PM
Subject: Governor Hochul Has Signed
the Living Donor Support Act!
"Hello!
I am delighted to inform you all that the New York State's Living Donor Support Act (LDSA, S. 1594) was signed by Governor Hochul today.
New York is becoming the best state for organ donation!
Waitlist Zero's Executive Director Josh Morrison wrote the legislation. State Senator Rivera from The Bronx and Assembly Member Gottfried from Manhattan sponsored the bill.
This spring, a team from the NKDO, NKF, DOVE, LiveOn New York, and Waitlist Zero lobbied for the bill's passage in Albany. Soon after, the LDSA was unanimously passed by both houses.
This new law creates the opportunity for New York's living donors to avoid going into debt to donate. Living donors will be reimbursed for their lost wages and out-of-pocket expenses. New York will be the first state in the country to offer this opportunity for donation to be cost neutral for donors.
Currently the Federal Government only reimburses when both the recipient and donor make less than 350% of the poverty line (around $47,000). The LDSA will reimburse the lost wages of donors who make up to $125,000 as well as the costs of donation (travel, childcare, etc).
In addition, the LDSA will ensure that all potential recipients will be educated about transplantation.
There are currently 8,569 people on New York's transplant wait lists, 7,234 of whom are awaiting a kidney. With the LDSA, we anticipate that far more New Yorkers will benefit from a living organ donation.
Here is the press release.
On Tuesday, January 3rd from 4-5pm ET, we will have a virtual celebration and toast the passage of the LDSA! Here is our zoom link.
Please share this good news far & wide!
Best,
Elaine
Director, Waitlist Zero "
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Because the National Living Donor Assistance Center (NLDAC) is a payer of last resort, the NY law will replace NLDAC for NY donors who do meet the means test, and so it will also allow the NLDAC budget to go further.
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Update: Frank McCormick writes to alert me that, like the authorization for NLDAC, the NY State law (https://www.nysenate.gov/legislation/bills/2021/S1594) "requires that the Program shall be payer of last resort..." I hope that this doesn't turn into a competition to be the payer of last resort in a way that might cause some NY donors to fall between the cracks, and not be reimbursed either by NLDAC or the State of New York.
Saturday, August 21, 2021
Introduction to NLDAC (the National Living Donor Assistance Center)
I'm on the advisory board of the National Living Donor Assistance Center, which has recently gotten increased resources and mandate to financially support means-tested living kidney donors who have out of pocket expenses for travel, child care, and lost wages. Nondirected donors are now also eligible for support. The idea is to remove financial disincentives for donation, and NLDAC aims to backstop other efforts, as a federally funded payer of last resort.
They are trying to spread the word, and have prepared a one minute video: Introduction to NLDAC
"Learn about support for people considering living organ donation. NLDAC helps eligible donors with travel, lost wages, and dependent care costs. Visit our website to learn more. Your transplant center can help you apply."
Sunday, January 21, 2024
Legislative proposals to help living kidney donors
Martha Gershun brings us up to date on various proposed pieces of legislation to help organ donors and increase access to transplants.
Legislative Efforts to Support Living Kidney Donors, by Martha Gershun, Guest Blogger
"As a member of the Expert Advisory Panel to the Kidney Transplant Collaborative, I have been honored to provide input during the development of the organization’s priority legislation, the Living Organ Volunteer Engagement (LOVE) Act. This legislation would help build a comprehensive national living organ donor infrastructure that would support a national donor education program, create a donor navigator system, ensure appropriate donor cost reimbursement, collect essential data, and improve all aspects of living organ donation across the country, substantially reducing barriers that limit participation today.
Key provisions of the LOVE Act would:
- Provide reimbursement for all direct and indirect costs for living donation, including lost wages up to $2,500 per week.
- Provide life and disability insurance for any necessary care directly caused by donation.
- Modify NLDAC rules so neither the recipient’s income nor the donor’s income would be considered for eligibility.
- Provide for new public education program on the importance and safety of living organ donation.
- Provide for new mechanisms to collect and analyze data about living organ donation to enable evidence-based continuous process improvement.
Numerous other federal proposals are also currently vying for support to address barriers to living donation on a national level. They include:
Living Donor Protection Act (H.R. 2923, S. 1384)
- Prohibits insurance carriers from denying, canceling, or imposing conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual’s status as a living organ donor.
- Specifies that recovery from organ donation surgery constitutes a serious health condition that entitles eligible employees to job-protected medical leave under the Family and Medical Leave Act.
Organ Donor Clarification Act (H.R. 4343)
- Clarifies that reimbursement to living organ donation is not “valuable consideration” (I.e., payment), which is prohibited under the National Organ Transplant Act (NOTA)
- Allows pilot programs to test non-cash compensation to living organ donors.
- Modifies NLDAC rules so the recipient’s income would no longer be considered for eligibility.
Living Organ Donor Tax Credit Act (H.R. 6171)
- Provides a $5,000 federal refundable tax credit to offset living donor expenses.
Honor Our Living Donor (HOLD) Act (H.R. 6020)
- Modifies NLDAC rules so the recipient’s income would no longer be considered for eligibility.
- Requires public release of annual NLDAC report.
Helping End the Renal Organ Shortage (HEROS) Act
- Provides a $50,000 refundable federal tax credit over a period of five years for non-directed living kidney donors.